Uncertainty in illness and personal recovery
This source preferred by Peter Wolfensberger
Authors: Wolfensberger, P.
Start date: 6 November 2014
Uncertainty prevails in all human existence (Penrod, 2001). Mishel (1988) originally described uncertainty in illness as “the inability to determine the meaning of illness-related events” and later specified that it “is viewed as a fluctuation that can either regress or cause no particular disruption” (Mishel 1990).
Hansen et al. (2012) describe uncertainty as a multidimensional concept and a major part of illness that in its purest form is a neutral cognitive state, meaning that it might be experienced negatively or positively. Feelings of uncertainty in illness are described as stressful and a burden, giving rise to fear and worry, unpredictability, ambiguity, inconsistency, vagueness and loneliness, whereas facing uncertainty seems to be along a whole continuum from stress through reorientation and adjustment, acceptance, hope and even optimism (McCormick, 2002; Hansen et al., 2012). Perrett and Biley (2013) who investigated the process of adaptation for those living with HIV found that negotiating uncertainty could be defined as the core category in the process of adaptation to illness. The authors described negotiating uncertainty in relation to several sub-categories that emerged from their data (such as "strengthening through hope", "seizing opportunity" or "planning for the future") as characterising different stages of adaptation (Perrett & Biley, 2013). The aspects of hope, opportunity (meaning of life and goals) and regaining ones personal responsibility also play an integral role in the concept of personal recovery, a process that describes the life experience of people with mental illness to accept and overcome the challenge of disability, integrating it into their lives (Slade 2009). Therefore, personal recovery can be described as the adaptation process to mental illness in a similar way as negotiating uncertainty has been described as the adaptation process to HIV.
An international expert panel of mental health professionals discussed their own experiences in relation to uncertainties in illness among people living with mental illness (Wolfensberger, 2014 – in preparation). The findings of the panel strongly support the hypothesis that uncertainties seem to be an integral part of the adaptation process to illness among people living with mental illness. However, the concept of uncertainty in illness or the process of negotiating uncertainty in people living with mental illness has not been really investigated yet.
Therefore, the current research project will focus on personal experiences of people living with mental illness to identify relevant aspects and issues of their adaptation to illness and recovery process. Initial findings of the qualitative study will be presented at the conference.